Doctor-patient friendship helps make an upside-down world right

Seven-year-old Jacob Downing has a list of caregivers as long as his “different” right arm.

On top on the list is a be-spectacled, bow-tie-wearing neurologist. Dr. Michael Rivkin is co-director of the Boston Children’s Hospital Stroke and Cerebrovascular Center and the first person Jacob remembers seeing after the emergency surgery he underwent following a stroke.

Jacob doesn’t remember the surgery to clear the blood clot that caused his stroke. “Dr. [Darren] Orbach worked a miracle for him,” says Jacob’s mother Nichole. Orbach is the neurointerventionalist who performed the endovascular thrombectomy procedure to break up the blood clot that caused his stroke.

“Like a lot of doctors at Boston Children’s, Dr. Rivkin talks directly to Jacob. Jacob knows he is trying to help him, and it shows,” says his father Justin.

And Jacob has needed a lot of help in the aftermath of his stroke. Initially, he seemed to quickly regain some of his lost skills.

Five days after the stroke, on Nichole and Justin’s 13th anniversary, Jacob started walking. “He had a smile on his face. He was a little wobbly, but it was the most amazing gift for us,” says Nichole.

Jacob takes his first post-stroke steps.

“Jacob has a big heart, great determination and a winning personality,” says Rivkin.

Jacob recovers from his stroke

Like many stroke patients, Jacob has recovered in starts and stops. When he spotted a tricycle outside of his hospital room door, Jacob couldn’t resist the opportunity. He hopped on and started speeding up and down the cardiac floor.

The next day, Jacob was transferred to Franciscan Children’s for additional rehabilitation, including physical therapy and occupational therapy. He progressed from baby steps to running and within 10 days was released home.

By that point, he had missed nearly three weeks of first grade and was itching to get back to school and his friends.

Nichole and Justin agreed to send Jacob back to class, but the transition was hard. He had regressed.

“He couldn’t read like he had been able to before the stroke, and he struggled with numbers as well as becoming very tired quickly. His attention span was extremely limited, and he had a hard time carrying on conversations as well as regulating his emotions. Jacob felt very frustrated, and it showed,” says Nichole.

“Once in a while, glimmers of my big, brown-eyed boy would peek through. Jacob would start talking and acting like his old pre-stroke self for short periods, and I would hold my breath to see and hear him talking like himself again,” continues Nichole.

“Sometimes Jacob would start talking and asking questions about what happened and why he had to have surgery. It was difficult to explain to a 6-year-old exactly what happened and for him to comprehend,” says Justin.

Jacob’s steady schedule of medical appointments, acupuncture, occupational and physical therapy visits and tutoring, along with the stress of trying to relearn at school, amplified his frustration. He was overwhelmed going to the hospital and all of his other appointments and would ignore the provider and either act up or completely shut down.

So Nichole was surprised when her son greeted Rivkin with a giant bear hug at a regular follow-up appointment. “He had never done that with any of his other doctors,” she says.

For the last year, Rivkin has been a steadying presence, keeping a close eye on his young patient’s post-stroke challenges.

Jacob has dystonia, a movement disorder that has affected his right arm and leg. Sometimes, his arm sticks out or can’t be controlled. Rivkin has prescribed different medications and Botox injections to improve its function.

It’s been more than one year since Jacob’s stroke, and with the support of his family, amazing doctors and therapists and incredible teachers, he has found new ways to be happy, says Justin.

“We did everything we possibly could to help Jacob in the last year — physical therapy, occupational therapy, acupuncture and private tutoring. Sometimes, it felt like it was too much,” says Nichole.

Now, one year post-stroke, Jacob is reading at grade level and enjoying school again. He’s found new hobbies; he’s become a science buff who loves sharks and whales, martial arts and Star Wars. He tells his friends, “We’re all different. My arm is different.”

“Jacob feels good about himself, he can hold a conversation, and he’s proud of what he can do, but most importantly, he is a happy again and has the best smile in the world,” says Nichole.

Nichole has a bit of advice for other parents facing the challenges of an uncertain recovery, “You want a crystal ball. You want a timeline. There’s no such thing. Be patient, and stay positive. You cannot control what has happened, but you can control the care and direction your child needs to get the best care and help they deserve.”

Jacob is partial to a quote from Master Oogway of “Kung Fu Panda,” one of his favorite movies. “Yesterday is history, tomorrow is a mystery, but today is a gift, that is why it is called a present.”